Hélène used up all her vacation days to care for her husband; she ended up taking 5 years worth in advance.
So he was in the hospital and caught C. difficile. So that was the first four months of being a caregiver. So of course I could not work. I used up my vacation, my sick leave, my anything leave, and then went onto unemployment—on sick leave for me at that point because you have to have a reason; they won’t give it to you just because you’re caring for somebody. You don’t get anything.
So that lasted maybe—he was diagnosed in November; I went back to work in March and five days/week was not feasible at that point in time too because he was starting other treatments. So what helped at that point was I have an elderly aunt who offered to take him to the treatments and pick him up after. And then the treatments were all day long. So he was in the hospital at that point I could keep on working. It’s after when he’d come home and it’s finished, then he was very ill all the time, so I would take a week off after a treatment […] like, on and off, and on and off, and on and off, which meant that I used up all my vacation time up until 2010.
More from: Hélène
- Interaction with professionals – HélèneHélène’s husband asked the doctor to treat him not as a number but as a person, and since then they get along really well.
- Health system issues – HélèneHélène was eventually reimbursed for travelling for medical care after writing to her members of parliament.
- Caring for yourself – HélèneTaking care of yourself doesn’t have to cost much. To Hélène, little things can be a big help.
- Impact on professional life and career – HélèneHélène used up all her vacation days to care for her husband; she ended up taking 5 years worth in advance.
- Financial impact – HélèneHélène discovered that drug companies sometimes help patients pay for medication.
- The future and caregiving – HélèneHélène wishes that dying was easier to talk about. She worries about being ready for the future.
- When care changes over time – HélèneHélène would like more information about how to deal with the final stage of her husband’s disease.
- Advice for other caregivers – Hélène“The squeaky wheel gets the grease. And you don’t have to squeak annoyingly but you can squeak nicely.” It took Hélène a long time to figure that out.